Written by

Jennifer Hogeland
For Press-Gazette Media

Eight years ago, Margaret Meder's world was turned upside down. After having a seemingly normal second pregnancy, Meder was shocked to discover at her son Evan's birth that he had so many physical anomalies.

A misshapen head, wide-set eyes and fused fingers and toes were the first signs something was wrong. Then doctors rushed Evan to the NICU because he was in respiratory distress. After a day, they diagnosed Evan's condition as Apert Syndrome - a rare disorder that affects 1 in 140,000 births.

Evan spent the first month of his life in the hospital; respiratory troubles prompted frequent ...